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Unbelievable Pain: 10 Years of Being Told I was Overreacting to Chronic Pain

I’ve been wearing glasses for the vast majority of my life. I think I got my first pair when I was one. While I can’t say that my history with glasses has been completely uneventful (I am autistic after all), most of my issues stemmed from dealing with getting a new pair adjusted comfortably (AKA my mother’s worst nightmare), then any issues were either routine maintenance—getting a nose pad realigned after one got bent—or because the glasses were faulty—I do not miss that pair of glasses from when I was ten that was constantly losing screws and had the lens fall out about once a week. So, when I was twenty-one and my glasses felt tight behind my ears, I assumed that I either needed to get them adjusted or buy a bigger pair.

The thing is neither worked. When adjustment failed to make my glasses comfortable, I bought a new pair but that didn’t work either. So, I exchanged them for another pair. I was still in pain and the pain was spreading and getting worse. What had started out as pain where the arms touched my head now also hurt pretty much everywhere glasses touched my face. Particularly on my nose. Just taking the glasses off wasn’t enough to stop the pain. It would throb for days.

All of this was going on for months and everywhere I turned people dismissed my pain as just my being autistic and not being able to deal with a little discomfort. Regardless of the fact that I had been successfully wearing glasses without major incident for two decades. I couldn’t wear contacts so I started complaining to doctors.

At first, I was largely dismissed. I was told I was overreacting or that it was all in my head, but I wouldn’t shut up about it. Even though I always described the pain as feeling like it was on the surface of my skin, the doctor decided that it might be an inner ear issue or something with my sinuses, I was referred to an Ear Nose & Throat specialist who found nothing even after a CT scan.

I was still in pain though and it was getting worse. By this time, I could barely stand to wear glasses for any length of time and when I did my right ear would wiggle involuntarily every time I spoke, smiled or ate something causing my glasses to jiggle up and down on my face causing more pain from the friction.

I stopped wearing glasses entirely (my eyesight wasn’t great but I could manage) and the stress from the pain and not being able to find a solution resulted in long-term insomnia which in turn led to migraines.

The doctors decided that it had been migraines all along despite this pain being separate from what I had already described. They decided to check if I had hydrocephalus which involves a spinal tap and at least two MRIs. Spinal taps suck on their own but they also cause hideous migraines. On the day of my second MRI, I was in so much pain that I couldn’t bear to stay vertical. I also couldn’t get to the hospital for my MRI because it was Winter in Saskatchewan and there was so much snow that a bus had gotten stuck at one end of our road and the tow truck sent to get it out was stuck at the other. I eventually got the MRI and I don’t have hydrocephalus. I was diagnosed with an unspecified migraine disorder and given Elavil.

Elavil pretty effectively dealt with my insomnia which dealt with the migraines. It didn’t touch the pain on my face or on my temples. I still couldn’t wear glasses.

An optician recommended that I try a pair of ultralight titanium frames. They cost about $900. I was desperate and convinced my mother to buy them for me. They weighed nothing. They still hurt my face. After what feels like dozens of adjustments (you think I’m exaggerating but I’m not, that optician is a saint) I finally got them to a place where I could tolerate them for a few hours at a time. I basically only wore them when I left the house. I took them off the second I got home.

At that point, I hadn’t worn glasses in about three years.

Whenever my prescription changed, I would just have the lenses replaced on that pair with a promise from the optician that nothing about the frame would be moved during the process of changing the lenses. Alas, eventually opticians refused to change the lenses claiming that the frames were so old that they didn’t have the structural integrity to undergo another set of lenses. I could no longer forego glasses, so I just had to try and make do.

This generally meant smothering my glasses in moleskin, a first-aid product that is soft and fuzzy on one side and sticky on the other. I put that stuff everywhere, on the nose pads, on the arms. It wasn’t pretty but it was the only thing that made glasses tolerable.

I was still trying to figure out why I was in so much pain but doctors had more or less stopped paying attention to me when I complained about it. My glasses still hurt and I still wasn’t wearing them as much as I should but everyone was telling me that my pain was irrational. They’d been telling me that for nearly a decade. I started to believe it. I know people reading this right now think I’m full of shit. I started to believe that I must not be buying the “right” glasses. It turned into anxiety that would see me panic purchase glasses that I couldn’t afford because maybe just maybe these ones would be different. No matter the style, no matter how different from other glasses that I’d tried, they never worked. I was still in pain.

Fast forward to late last year. I got a medical marijuana prescription for pain associated with my cerebral palsy. Suddenly the pain was gone. Not 100%, I knew it was there but it was mostly an irritation. I can ignore an irritation. There are still glasses that I can’t seem to wear. Metal frames with nose pads will irritate my nose too much for full day wear but I can stand them for short periods of time. I have better luck with plastic frames.

Suddenly, because I had figured out how to treat the pain, my doctor started taking it more seriously. I got a referral to a neurologist and three weeks ago tomorrow I was finally diagnosed with Atypical Facial Pain (sometimes referred to as Persistent Idiopathic Facial Pain).

The weird thing is that while I feel vindicated and deep down knew my pain was real. The doubt and gaslighting I experienced in over a decade of pain has had an impact. One of the unfortunate issues with the way Canada handles legal medical marijuana is that patients don’t always have consistent access to certain products. My supplier was out of CBD for months (yes for nonCanadians who might be used to CBD being considered legally separate from marijuana. In Canada, CBD is considered weed and you need a special kind of prescription to get it) and the came back. Yet some part of my brain had somehow convinced itself that maybe I had been making it all up. I’d been pain-free for weeks after all. So, I ended up experiencing a lot of denial when the pain came back even though I didn’t have access to the medication I was using to control it.

This is the price of people not believing your pain. You can’t even look at it objectively anymore. I will likely need to manage this pain for the rest of my life and I’ll probably have periods where I’m still convinced it’s all in my head for at least a long time to come despite the vast difference in quality of life that pain treatment gives me and the fact that I’ll also very likely have periodic reminders of just how real my pain is because I only have intermittent access to medication. CBD is out of stock at my supplier again, so I’m probably in for a reminder soon.

How to support my work and a not so subtle request that you help me buy drugs. Medical Marijuana isn’t covered by most health insurance providers in Canada and the few that do only do it on a case by case basis so I’m paying out of pocket for necessary pain intervention and this has taken a toll on my already precarious financial situation.

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4 responses to “Unbelievable Pain: 10 Years of Being Told I was Overreacting to Chronic Pain”

I’m in this position now after major surgery and having fibromyalgia. The pain is constant and I’ve been thrown out of hospitals and doctor’s offices and gaslighted. One of these days hopefully someone will see I’m not after drugs and treat my pain.

I’ve been declared 100% disabled by a judge for Social Security. I have an intrathecal pain pump implanted in my body and I *still* question myself about my pain because of being told it wasn’t that bad. Too many doctors think that if it can’t be seen or measured by a test, it doesn’t exist.
Is it possible to have your CBD mailed to you? I’m in California and I don’t know what the laws are in Canada.